I continue to speak out because currently there are not enough people with dementia being asked to speak at or attend events, or being actively involved in things about them. Perhaps by being a role model, and challenging the status quo, it will bring about change. During Dementia Awareness Month, with the theme of dementia-friendly communities, it would seem logical to me that people with dementia all over Australia would be included and fully involved. It seems I still have so much to learn…
- It is imperative everyone understands the human cost of dementia
- So you can walk in my shoes
- To break down the myths of dementia
- To help reduce discrimination and stigma
- Nothing ‘about us, without us’
- Educate and raise awareness
My willingness to speak out has been fuelled since being diagnosed with dementia, by the fact that much of our care feels symptom based, and there is a very thin veil between people with dementia being treated with dignity as opposed to being treated like morons.
I believe nothing will change until we recognise that it is imperative we all understand the human cost of dementia.
The other reason for speaking out is the only way you can understand me is to walk in my shoes; if I don’t invite you into my world, then how can I reasonably expect you to know what it is like? Since being diagnosed with dementia, I have been told I can’t possibly have it because I can speak, but you ‘sound and look so intelligent’, or that I must be lying about the diagnosis for notoriety. I’ve even been told by a well-meaning (?) Registered Nurse that no matter what I do, it will get me in the end!
I hope by speaking out I can break down some of the stereotypes and stigma about a diagnosis of dementia. Christine Bryden, Richard Taylor, Helga Rohr, and many others living well with dementia have said the same. Living well with dementia, seems to be a reason why many people doubt we have dementia. How extraordinary… if we were doing well with cancer, everyone would applaud us, and no-one would question the diagnosis.
It seems incredulous to me that I and many others I know constantly need to justify the diagnosis of dementia, and that living with it well is not seen as more positive. If I had sustained a brain injury through a car accident or a stroke, and was doing really well with rehabilitation, my success would be applauded and explored, rather than the extent of my injury questioned. And, if my success was significantly greater than others with a similar brain injury, I’m pretty sure others would want to know what I was doing differently to bring about a more positive result.
I also speak out because there is also a gross under representation of people with dementia deciding our care and futures. In Scotland there is a very active group of people living with dementia who set up a group 12 years ago called The Scottish Dementia Working Group who are advocates for their own outcomes, and they have a slogan, nothing about me without me. The slogan came from the disability sector, but has been used globally in the dementia sector by people with dementia for at least 12 years now, although it is only just beginning to be realised.
Those of us living with dementia who are speaking out also want to educate others what living with dementia is really like, and to raise awareness about it. We want to reduce the stigma, discrimination, isolation and exclusion that has been the experience for far too long for people with dementia. We want to break down the myths and stereotypes, and let other diagnosed with dementia it is possible to live better lives than we have been prescribed upon diagnosis.